Seeing my GP tomorrow and feeling nervous...

[Icicles]

I have an appt tomorrow afternoon. Was feeling confident that I would present her with the Medichecks result and ask her to repeat it, along with vitamin and my always high ESR which haven't been done for over a year. But I read that Biotin can mess up results and I had no idea until I read something on here a few days ago. I realise that I may have wasted money on a test whilst taking a high dose of biotin. Now I have lost my confidence in approaching my GP about it. Feel a bit daft. Can anyone help me form the basis of a good case to put to her, please?

[Helena877]

Have they done any other investigations into why the ESR is high? I ask because my son’s was raised and they ended up doing a barrage of tests as a result of this. It was nothing thyroid related but they tested for other autoimmune conditions, ultrasound all sorts - panic mode as soon as I told them we have had lupus , giant cell diagnosed in the family.

When did your GP last carry out their own tests?

What is it you are wanting of your GP?

[Icicles in reply to Helena877]

I was referred to rheumatologist and had investigations, nothing abnormal found. I have hypothyroid symptoms, and have for years, but nothing ever comes of it, because the blood tests are always in and around this range. My mother has low thyroid and is treated, she had a really good response to treatment. It seems inevitable that I will go over a threshold and become 'treatable' at some point. A friend's GP did a trial with her based on her symptoms rather than her borderline blood results. She had a really good response and hasn't looked back. I'd like to be sure that a trial of treatment wouldn't help and then I would let it go, I think! I had TSH done 14months ago, vitamins done 4 years ago

How did it work out with your son?

[Kell-E]

Walk in there with confidence...make her tell you why your results are wrong. I'll bet she has no idea biotin can affect results.

[crimple]

I would ask for a trial based on your Mum's outcome.

[greygoose]

With those results, I wouldn't mention the biotin, if I were you. Your TSH may not be very high, but your Frees are so low that you should be treated. Do your research on Central hypo, and suggest it to her. But, you've got to know what you're talking about, because she sure as hell won't!

[Lisaf01]

How high is your ESR (with range)?

[Icicles in reply to Lisaf01]

ESR 50 (1-19) has been 80

Just about to go and request that it be done again. Wish me luck

[Lisaf01 in reply to Icicles]

Wow, that's high - do you have any reflux or gastric issues at all? Just interested from a personal perspective really.

Wishing you good luck with your appointment - let us know how it goes.

[Icicles in reply to Lisaf01]

Hello Lisaf01

Feel like a criminal plotting something truly heinous! GP began looking like she knew what was going on and told me that I sound like I am oestrogen deficient! I would be, I had a total hysterectomy 5 years ago. This was prompted by a huge endometrial mass which had engulfed my appendix and was starting on my bowel when the pain of it became too much for even me to ignore. Why is it more acceptable to consider prescribing me oestrogen (something my gynae oncologist said to never do) than consider the possibility of me following in the footsteps of my mother...? I notice (from your profile) that you may be self medicating, and that some of your results were similar to mine! I am not averse to going it alone, I don't know enough about stuff yet, but you had a test (which I didn't do) which confirmed something for you which set you off. What would you say is your thyroid issue?

Anyway, I am booked in for a fasting bloods in the morning and should have the results next week. I am fully expecting to take my treatment elsewhere. In fact I will probably spend the next 5 hours figuring out where that will be!

[Lisaf01 in reply to Icicles]

Hi Icicles,

The reason I asked was because my ESR is raised (not as much as yours) and I have been having increasingly bad gastric issues since I had my gallbladder removed in 2013 and high ESR can be linked to gastric issues (amongst others).

My research seems to indicate that being hypothyroid can also be linked to delayed stomach emptying, which can massively impact people when they've had their gallbladder removed.

You're right, I am self-treating. I've never managed to get a doctor to agree that I have a thyroid issue, despite all the symptoms, and improvement of the symptoms on Natural Desiccated thyroid (NDT). I am pretty confident self-treating, but I have the additional complication of hoping to be pregnant through IVF soon.

I am really sorry to hear you've had other hormone issues related to the mass you had removed. It's entirely possible that estrogen is an important contributor with your issues. Certainly with your low T3 there's something going on and you may have to go down the route of self-treating if you can't get further with your doctor.

The factors that set me off were really my history of depression and gastric issues, and very very low temperatures, huge hair loss and a load of other classic hypo symptoms followed by my GP refusing to listen to my hypothyroid research and trying to diagnose me with CFS and fibromyalgia and being extremely difficult about treating my very low B12. My own testing showed many of my vitamins and minerals were shot, and I had a very low free T3, and a very high rT3.

I corrected all the vitamin issues (and you will need to look at those too) but I still didn't feel better until I'd got my free T3 right at the very top of the range.

Have you had your B12, folate, vitamin D, selenium & iron tested yet? Even if you decide to self-treat for thyroid, you must make sure those are all optimal first (that means near the top of the range - the middle isn't good enough) for any hormone replacement to be proper effective. Indeed, correcting those issues if you have them, may go some way towards correcting your other issues.

[Icicles in reply to Lisaf01]

Hello Lisaf01

Yes, I am not taking my D3 at the moment so as to get a clearer picture of what's going on, and someone else looked at my results from 3 years ago which suggested problems with D3 among others. I stopped all my supplements last week after realising that I had completed the Medichecks test with a large dose of biotin on board. She is going to do all the vitamin tests and repeat the thyroid tests, but God knows what they will actually turn out to be. She seemed sympathetic, but it's almost as if they have been indoctrinated into some cult where thyroid problems are not permitted. Have you not seen an endocrinologist? You've just researched yourself and bought online? I admire you. There's just so much to know. I may see a private doctor locally who is on the thyroid uk list. I'd love to cut out the guys who make a lot of money because the GPs all belong to a cult, though. I'll do my blood test tomorrow. You had a result which confirmed something for you, doyoumean that you were then sure that you had a treatable hypothyroid condition and sourced the NDT that you already knew would suit you? That means going back to Medichecks for me and doing rT3 test.

Sounds pretty frightening what you were describing about possibly being discovered to be self medicating and being punished for it, although you knew that it is better for your baby if you are thyroid fit. I do really admire what you're doing. Possibly through always being hypothyroid, I never conceived and put it down to bad luck and running out of time. I do suffer with ghastly constipation so always wonder what sort of dreadful inflammation is going on. I started taking pro and prebiotics and I've been doing kefir water. It went well at first, but it's very costly and and it stopped having such good effects. I am fully prepared to change diet and improve my supplements intake. My new D3 and biotin is sitting here ready to take, and I will be sourcing selenium and magnesium in the next few days, once I've decided what to do about anymore testing. What do you think about an rT3 test? That could be the decider?

Thank you for your time, it's great to hear from someone who is doing what I am contemplating.

[Lisaf01]

I have to say, I felt ever so much better just correcting my very low B12, folate and D3. I could not correct them by taking tablets, the only thing that works to raise my levels is the Better You sprays, which are excellent.

I take two tabs of magnesium (forget the actual tablet dose) at night to stop the awful leg cramping I was having. I tested stopping it several times to see if the cramps come back and they always do so I will be on magnesium for life. Having said that, I filter all my water, and I have recently read about filters removing the natural magnesium from water, so I may change what I do there and see if I can stop the magnesium tablets. I also take selenium, zinc, vitamin C, vitamin K (with the D3), perfectil, and a probiotic. I am toying with the idea of taking iron as my ferritin isn't optimal, but I don't want to promote constipation.

I suspected thyroid issues for many years, with my long-term history of depression, carpal tunnel syndrome, delayed gastric emptying, cramps, messed up metabolism, low temperature, swollen ankles and wrists, very cold extremities and weight issues. It was only when things really came to a head and the doctor declared everything looked normal and it must be CFS or fibromyalgia that I decided to take matters into my own hands. The trouble is, my TSH has never risen above 0.8 so there's no way I could get a diagnosis even though I have all the symptoms, and a low T4, T3 and high rT3. In the old days, before the TSH test, doctors listened to symptoms and tried Natural Desiccated Thyroid, so I reasoned I would try the same and I feel it works very well for me.

I've since had genetic testing and found out that I have two copies of the faulty gene that's linked with poor conversion of T4 to T3, and I think that might be part of the root cause of all my issues. So I am toying with the idea of taking T3 alone rather than NDT, although of course I can't switch around like that if pregnant, so I've put the idea on hold for the moment.

So yes, it works for me, but I decided to come off it because of fears of being questioned during pregnancy and also a worry that I wouldn't know exactly how to increase my dose properly. I reached out to several endos, none of whom wanted anything to do with me and I was trying to get by with no NDT until the embryo transfer hoping that eventually my TSH would rise naturally during pregnancy and I could get diagnosed then. My symptoms were getting worse and worse, and I thought to myself, if there was no possible pregnancy to think about, I'd never have stopped the NDT, and I'd be feeling normal. I also realised that hoping for a diagnosis during pregnancy was probably wishful thinking because my TSH might not raise enough to be diagnosed, and I'd be putting myself and the baby at risk.

So I took the decision to start treatment again and I have made a note of when to expect to make increases and when to have bloods. I am still quite panicked about being questioned about it, but I have to do what feels right for me.

I am very touched to hear you say you admire me. I am just muddling on the best I can whilst trying to run a business at the same time. It's stressful, and really hard, and very worrying when you know you could be "found out" at any time and guilted about it. I have a lot of night time terrors, mostly related to delivering a baby only to have it taken away because they say I put it at risk with my self-treatment. Trouble is, one minute I know I am doing absolutely the right thing for me and for any potential pregnancy, but the next minute I am bogged down by terrible self-doubt, and worry that I'd fall to pieces if I was questioned, and be too tongue-tied to tell them about my oodles of research and testing that have lead me down this path.

I am very sorry to hear you didn't conceive. I spent almost my entire life trying not to conceive and then met my husband late and despite trying for two years, we didn't conceive. IVF was our only chance, and I've been working with a clinic in the Czech republic. Hopefully I go next month to have our only viable embryo transferred in.

With the results you've posted, I'd say you're hypothyroid but most doctors probably wouldn't, particularly since they don't seem to believe in non-hashimotos hypothyroidism. Your TSH is a bit high, but more worrying (to me anyway) is your low free T3. I had most resolution of symptoms when I got mine up to around 6. You may not get a doctor to recognise this and treat you for it though.

My advice to you would be to do a LOT of research. Verify everything you read with at least 2-3 other sources (there's a lot of nonsense out there). When you get tested, always test as early as you can in the morning, preferably without having eaten or taken any meds. If you do test rT3, make sure you test it at the same time as free T3 as this is the only way you can get the ratio worked out. There's a lot of disagreement about what rT3 means, so it's not wise to base any treatment on that figure alone. For me, I feel that free T3 is the main one to monitor and I only feel good when mine is right at the top of the range. Don't be a slave to bloodwork though, I use it to monitor dosage and I make a note of symptoms before I do bloodwork and see if the bloodwork confirms what I've been feeling (not the other way around). Start measuring your temperature too, when you first wake up before you get out of bed, and also mid-afternoon. Use a proper basal thermometer which has two decimal places. If your temp is very low, say 97 something, in the morning, that's a strong indicator. If it's in the mid or even high 97s in the afternoon, that's also an indicator. If still menstruating, it's only really days 3-6 that are measurable, but I believe if you're post menopausal any time of the month is fine - but don't quote me on that.

The list of books I recommend are:

Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment

by Bowthorpe, Janie A

Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it by Durrant-Peatfield, Barry

Stop the Thyroid Madness II: How Thyroid Experts Are Challenging Ineffective Treatments and Improving the Lives of Patients by Heyman, Andrew

Living Well with Hypothyroidism Rev Ed: What Your Doctor Doesn't Tell You... that You Need to Know by Shomon, Mary J.

I've got another one related to pregnancy but I haven't listed it here.

Please feel free to stay in touch so we can discuss things.

Lisa

[Icicles in reply to Lisaf01]

Thank you so much Lisa, it’s so kind of you to come back to me with so much detail. How many times I have had an afternoon like this after having bloods taken, hoping that they’ll show something and putting so much store in the results coming through in a couple of days’ time. They never did and I just accepted what I was told, that I was ‘normal’. I’m going to read those books and really gen up. No one should really care about this as much as I do, and it’s up to me. I will investigate the sprays. I am new to thinking like this so I am catching up. Sad to think that it’s so late, and I’ve spent so long feeling so rubbish!

Just listening to Jeremy Corbyn asking a question about CCGs not covering costs of thyroid treatment forcing people to go private. It’s unlikely in this climate that anyone will take this up for me, I have to take this on myself and reading what you have written makes me feel hopeful and not defeated. It feels daunting, but I strangely felt a surge of ‘I can do it’ rather than ‘I’d be hopeless at it, and so are they, so it’s all a waste of time’

I’m not going to leave it up to them, I messed up having children, like yourself, frantic to prevent pregnancy, never giving much thought to how, one day, I would long for it. Time’s running out. I’m going to get this right.

Reading your post is like reading my own personal manual, you’ve been very generous with information that you must have spent ages collating and amassing. I’m onto it now, and hope to take up your offer to stay in touch to discuss things. Thank you x

[Lisaf01]

You certainly do have to take your own health into your hands, do your research and do what you need to do. I often have self-doubt, and panicky feelings, as well as depression particularly in the mornings. I frequently feel incredibly sad about discovering all this later in life, and the life I could have had if I had known about all this before, but it's important to try to put these type of thoughts behind us and be grateful we've discovered it now, and not when we're in such a state we have no hope of improving things. Take this chance to think positively about the future and to make an action plan.

I won't deny that it's hard, but the things that are worth doing aren't always easy. My husband tries his best to support me, but he's pretty lost with all this stuff. I still wish I could find a local doctor or integrative practitioner who would really help and support with all this, but it's probably never to be. I have the added stress of how to explain it all to the first person who sees my suppressed TSH (if we're lucky and get a positive IVF outcome in the end) and questions what I am doing, but I will just have to deal with that when I come to it. Now is the time I really have to work as hard as I can to reduce the negative thinking and stress reactions (very hard).

We are each our own best advocate, and although we don't have the years of medical training, but we know ourselves, and we have an incentive to put the time and effort into improving our own lives. With thyroid conditions as with many other conditions, the official care is so rubbish in most cases, you'd be hard-pressed to do a worse job yourself.

I think your next best step is to check all your vitamins and get those sorted if you need whilst researching the thyroid issues and trying to find an endo who will diagnose you and try you on the levo.

[Icicles in reply to Lisaf01]

Yes, I might be in a slightly better position than you, in that some of my numbers are a little odd straight away. I had a TSH of 3.93 this time last year and may persuade a private endocrinologist to trial me on something to get going. Now that I have had a break from taking the supplements I feel anxious about starting them again in case I need to do another blood test, but I do feel more positive about that now that I have read so much about it on this site.

As you well know, anxiety about the suppressed TSH is not a very fertile environment for your embryo to grow. You are doing all you can to be a good and responsible mother. The current climate in this country is that you take your chances on the NHS/voluntary/private sector and patiently wait to see what rubbish you are offered in the postcode lottery health care merry go round. To leave to chance your opportunity to have a healthy happy pregnancy and baby is irresponsible. And I bet that you could demonstrate how well you researched what you are doing and how you didn't leave it to chance. To be absolutely frank, social services are stretched to capacity dealing with all manner of hideous atrocities, which I am sure you know. Fear is a prompt to do something to protect yourself, when it starts to go round and round, it is unproductive and a negative drain. Maybe your fear could prompt you to prepare a summary/dossier of how what you did was only for good, and how well that went. And then lock it away somewhere and get on with creating a lovely fertile bed for your embryo to grow in. If you had to produce it to help you demonstrate what and why you did what you did, it's there. If you don't...great! And like you said, it is also demonstrating how well you know yourself and how pitiful the services were. It sounds like you have numbers and test results all ready to go anyway. You've probably thought all this through, so forgive my going on. When I think about how my mother smoked 40 a day through each of her 3 pregnancies and no one batted an eyelid, haha!

You'll find a way to say 'luckily, I have been taking responsibility for my own health issues while the UK goes through a crisis in its healthcare system and forgot about its patients while it was fighting for its own life' and be able to focus on creating a little fertile flower bed for your embryo, which is way more useful than rehearsing a conversation that you may never have to have. Easy for me to say.....

I'll get onto the vitamins, you start with the weeding, feeding and seeding

[Lisaf01]

I agree, your numbers should in theory put you in a much better position to get a diagnosis.

I do love your metaphors, and I need to think of it more like that, much more calming than my current thought processes.

You're not the first person to suggest a dossier. I might have to consider that, but I wouldn't know really where to start since I've been researching for well over 2 years now and although I have various resources, most of it is in my head (apart from my test results of course). Certainly if I got it all down in some sort of readable summary, I could carry it to appointments and bring it out if questioned.

Funny you should say about your mother smoking through her pregnancies, mine did too. I am certain in myself that self-treating in the way I have is best for me and for any pregnancy, but my certainty wavers when I am challenged and I have no idea how my general mood will be affected by the hormones of pregnancy.

I will find a way, mainly because I'll have to. I just have to work on minimising the stress and not worrying about things that haven't yet happened.

Let me know (privately if you want) how you get on with your side of things, and I will let you know how my end goes.